Privacy Vs Appropriate Care for Substance Abuse Issues

Lawmakers hear pros and cons of proposed changes to federal confidentiality law

WASHINGTON -- The director of policy for the National Alliance on Mental Illness of Ohio told a House subcommittee Tuesday that his brother's death could have been prevented had medical professionals known of his history of substance abuse.

"They gave a loaded gun to a person who's suicidal," said Dustin McKee, of the doctors who prescribed opioids to his brother, Brandon Johnathan McKee.

In 2014, Brandon McKee was in a car accident, leaving him with several shattered vertebrae that required surgery. Because of a provision within 42CFR Part 2 -- the section of the Code of Federal Regulations that relates to confidentiality for substance use disorder patients' medical records -- the orthopedic surgeon who performed the surgery was unaware that the patient struggled with substance abuse, McKee said.

The surgeon prescribed a high dose of opiate-based pain medication with multiple refills. McKee underwent a second surgery, after which he was given another prescription. When those ran out, he turned to heroin, his brother reported. Brandon McKee died that same year of a heroin overdose.

At the hearing before a subcommittee of the House Energy and Commerce Committee, Dustin McKee testified in support of a discussion draft of "The Overdose Prevention and Patient Safety Act," which would align Part 2 as it's commonly referred to with the Health Insurance Portability and Accountability Act (HIPAA).

The new act would allow patient information related to substance use disorders to be disclosed to those involved in "treatment" "payment" and "healthcare operations," including "health care providers, health plans, and health care clearinghouses," noted witness Gerald "Jud" DeLoss, JD, of Greensfelder, Hemker & Gale in Chicago.

Rep. Earl Blumenauer (D-Ore.) also testified in support of the act as a witness. He co-authored the act along with Rep. Markwayne Mullin (R-Okla.)

Blumenauer argued that "The Drug Abuse Prevention, Treatment and Rehabilitation Act of 1972" that spurred the Part 2 rules separates patients records' from addiction treatment facilities from other medical record creating a "life-threatening firewall."

"Doctors can't treat the whole patient with half a medical record," Blumenauer said, adding that Part 2 rules require patient consent for sharing such information. The proposed act would remove the consent requirement.

But opponents of the proposed act expressed concern that it could increase discrimination, and potentially discourage patients from seeking treatment.

Patty McCarthy, executive director of Faces and Voices of Recovery, argued in her written statement to the committee that the proposed act represents the "antithesis of the principle of patient centered, integrated care" and is fueled by the business interests of hospital associations, insurers, treatment agencies, and software vendors.

Rep. Frank Pallone (D-N.J.), who also opposed the act, said the intent of Part 2 was to protects those with substance abuse issues from possible consequences of disclosure of an addiction issue, which could include loss of child custody, loss of a job or housing, or potential involvement with the criminal justice system.

DeLoss emphasized that the bill does not "reduce or remove Part 2 protections against disclosures to employers, landlords, life insurance companies, or in response to subpoenas or discovery requests."

Several subcommittee members noted that mental health disorders and sexually transmitted diseases, including HIV, are not given special privacy protections, but McCarthy pointed out that substance use disorders can have criminal and legal consequences.

Witness Westley Clark, MD, JD, a psychiatrist and professor at Santa Clara University in California, called the act well-intended but inadequate. He argued that patients should have the right to say what happens with their own personal information; physicians who develop a relationship with their patients will get more truthful information out from them.

He acknowledged that fears of discrimination are real."Once the horse has left the barn, you can close all the doors you want, but you don't have the horse," Clark stated.

Another opponent was Rep. Joe Barton (R-Texas) who said, "Here we have a law that actually does provide privacy protections, and in the name of better healthcare we're trying to breach that."

Barton asked McKee if any physician asked his brother to waive his rights to privacy. "With all due respect ... how would the physician have known to ask?" McKee responded.

Rep. Anna Eshoo (D-Calif.) said there wasn't a "tidy answer" to this issue of consent. She mentioned a family member with serious mental health problems who, if asked to give consent to improve the coordination care, would not have been able to do so.

Even patients who are able to give consent and communicate with their doctors don't always do that, noted Rep. Larry Bucshon, MD, (R-Ind.), a cardiothoracic surgeon. He mentioned a woman who went into heart surgery without disclosing that she was taking dietary supplements that could increase the risk of bleeding. Patients simply don't understand the ramifications of their physicians' not knowing their full medical history, he added.

Another witness, Jeremiah Gardner, a public affairs and advocacy manager at the Hazelden Betty Ford Foundation in Center City, Minnesota, said he supported the act. He disagreed with the idea that privacy concerns would prevent people with addiction issues from seeking treatment. When a person is ready to ask for help, an expectation of privacy isn't their first priority, he told MedPage Today.

In the 1970s, the health system tried to avoid discrimination by keeping this information discrete with Part 2, but that only added to the stigma, he said.

"Now, that healthcare has evolved ... we have a decision of whether to keep that strategy, or have a new strategy which is let's integrate and confront discrimination. I think HIPAA is going to allow us to meet patients' needs and confront discrimination," he said.

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